Socio-economic
impact of ME/CFS

ME/CFS - is an extremely disabling chronic,
multi-system, multi-symptom, multi-organ
illness. The disorder has existed for
generations, but recently its prevalence has
increased dramatically. Those affected see
their lives disintegrate into an existence
filled with chronic pain and exhaustion, as
well as numerous other symptoms. Without
treatment, these symptoms can last years or
become permanent.
Introduction Two million
patients in Europe merely is the tip of the
iceberg

The disorder is not rare;
the number of patients in Europe is
estimated to be two million. This figure is
assumed to be merely the tip of the iceberg,
as the illness often goes unrecognized and
is therefore not diagnosed. There are - in
any case - more patients with ME/CFS than
with AIDS, multiple sclerosis, lupus or lung
cancer. ME/CFS occurs in all races and age
groups and in all levels of society. At
least 10% of the ME/CFS population is
younger than 15, including children under
the age of 4. British research has shown
that half of all children with a long-term
illness have ME/CFS, thus accounting for the
largest school absenteeism of all existing
illnesses.

The illness has a very
negative impact on the patient and quality
of life is alarmingly low. Approximately one
quarter of ME/CFS patients are entirely
house-, bed- or wheelchair bound. One in ten
dies prematurely due to major organ failure,
cancer, heart disease or suicide.

Less than 4% of
patients are reported to recover
spontaneously, and a number of these are
believed to have originally been
misdiagnosed with ME/CFS. Without
effective treatment, any degree of recovery
is almost non-existent. This illustrates the
need to fund research that will lead to the
development of effective treatment
protocols.
Social costs

ME has been recognised
by the World Health Organisation since 1969
at which time they emphasized the
seriousness of the illness and its profound
socio-economic implications. In recent years
the number of patients has exploded, as has
the socio-economic impact. This disorder is
especially worrisome for the economy because
it affects an increasing number of children
and young adults - the cornerstone of the
social welfare system. The drastic increase
in long-term economic costs - due to loss of
productivity and payment of disability
benefits - places an economic strain on the
welfare state. It is no wonder that the
Archives of Internal Medicine considers ME/CFS
to be a serious social health problem.

The estimated direct
and indirect socio-economic costs for Europe
are approximately Ä20 billion annually.
These figures are based on an American study
from 2008 which also stated that only 10-17%
of Americans with ME/CFS are correctly
diagnosed. This number is believed to hold
true in Europe as well, which implies that
over 80% of European patients are not - or
not properly - diagnosed or treated. Vast
numbers of patients are undergoing
expensive, unfocused testing in search of a
diagnosis and many have endured a variety of
potentially harmful treatments. This places
a substantial economic burden on society.
Discovery and implementation of a diagnostic
test and early treatment would save the
public health system billions of Euros
annually.
Concequences for the patient

More than 5000
scientific studies have shown clear
biomedical abnormalities in patients with
ME/CFS. However many doctors wrongly believe
that ME/CFS is a mental illness and their
patients must deal with disbelief and
mistrust on a daily basis. Patients are also
treated with scepticism by insurance
companies and social agencies. This
environment of disbelief causes numerous
social, medical and financial problems for
patients. The European labor circuit, the
Sickness Benefits Act and the education
system are simply not designed to
accommodate the type of chronic patient that
ME/CFS presents and many patients fall
between the cracks of social and medical
programs. The costs of the illness incur
rapidly - the average monthly expense for a
mostly bedridden patient is about Ä700 per
month - and without adequate support many
patients end up in dire social and financial
situations.
Conclusion

The extensive social
and financial problems faced by the patients
and the enormous cost of this illness to
society are largely due to lack of
understanding and interest from the medical,
scientific and political worlds. In Europe
there is a lack of government funding for
basic scientific research, training of
medical specialists, and for the
establishment of information-flow between
researchers and medical professionals.
Funding for scientific biomedical research
and education of healthcare professionals
would work to reduce the socio-economic
costs. ESME was established to facilitate
the achievement of these goals and thus ease
the impact of ME/CFS on patients and
society.